Wednesday, September 8, 2010

Baby, Updated

An extremely brief update (bedtime calls!):

Last Friday we got baby's chromosome test results - all normal.

True to our natures, DH was elated; I was deeply frustrated.

Why frustrated? Because I really do feel that there is something there to find. I don't know what that something is, but with that feeling present, a clean test does not mean a clean bill of health, but simply that we must begin the search again, put baby through more tests, etc. etc. etc.

I spoke to our developmental pediatrician, and she recommended finishing up with the specialist visits we have scheduled - neurology, cardiology, and genetics. The geneticist in particular will help us determine if we should do any more genetic testing, including another chromosome test that is more exact and can catch things that the other test sometimes misses. Neurology and cardiology are this coming week, and genetics is in October. So we should have some answers within two months.

It also begs the question - how far do we want to pursue this thing? We could keep testing forever, in truth. At what point do we want to just give up, accept the lack of a diagnosis, and just focus on therapy to treat symptoms?

My cousin M. very wisely told me that sometimes a diagnosis can be a handicap - it can be both an excuse ("Oh, we can't expect him to do X, because he has condition Y.") as well as a reason for teachers to write him off. In the absence of actual health problems, treating the symptoms might be good enough.

So that's where we are! We will know more in a couple of months. In the meantime, I am wading through paperwork (intake forms, record-keeping), and the chore of keeping all the doctors' offices networked (having each office fax their reports to all the other offices - yikes!) as well as trying to chase down the apparently elusive Arizona Early Intervention Program, which is supposed to provide free in-home therapy to at-risk children. I called them, gave my information, and was told that I'd be contacted within 48 hours. Two weeks later, I have heard nothing, despite repeat phone calls. The struggle continues tomorrow.

In the meantime, baby's tummy time (assigned by our therapist) is going well. Oh, how he hates his tummy time! I have limited it to four sessions of 30 seconds each, and already he has learned to flip off of his tummy to get away from the dreaded tummy time. He's adorable!

And now, off to finish my yogurt and hit bedtime! Hurray!!!

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